Endometriosis and cancer – Endometriosis.org (2024)

By Lone Hummelshoj, Marina Kvaskoff PhD, Andrew Horne MD FRCOG, and Stacey Missmer ScD

Over the last few years there has been increasing concern amongst women with endometriosis about their risk of developing cancer – ovarian cancer in particular – unfortunately aggravated by confusion around the data that supportthis link.

Whereas numerous studies have been conducted to investigate a link between endometriosis and the subsequent risk of developing cancer, many had:

  • a lack of power (not enough women enrolled in the studies),
  • recruitment bias (targeting specific demographics while not including others),
  • recall bias (women who already have cancer may view and report on their past differently from currently healthy women),
  • lack of specifics of the woman’s cancer subtypes,
  • lack of details of the woman’s endometriosis characteristics and symptoms, and
  • absence of detailed data about women’s demographics, lifestyle, environment, health history, and medical treatments that may be correlated with or influence both endometriosis and cancer risk[1,2].

In other words: the association between endometriosis and cancer is complex and our knowledge is growing and our understanding evolving.

This must be a focus of future research. To achieve this, we must demand funding for rigorously designed studies that will produce robust findings, and we must expect women with endometriosis and those who care for and about them to participate in this discovery.

Endometriosis and cancer – Endometriosis.org (1)First, we must do a better job at relaying health and risk information. All women are at risk for developing cancer. One in ten women have endometriosis.

The critical questions are: are women with endometriosis at greater risk for developing cancer compared to women without endometriosis?; if so, which women with endometriosis have greater risk? and what about endometriosis is increasing their risk?

The next step is to use this information to develop tools for early detection, personalised treatment, and even the potential for prevention.

In the meantime, let’s establish what we know today:

Endometriosis and cancer

Endometriosis and cancer – Endometriosis.org (2)Endometriosis has a benign nature, but it shares some characteristics with malignant tumours, such as invasion of local and distant organs, abnormal tissue growth, impacting function of target organs, and genetic damage [3].

There is no direct evidence that endometriotic implants turn into cancer. Genetic changes related to cancer risk have been found in some endometriomas (~20%) fromwomen with cancer on the same ovary [4]. However, these “cancer driver mutations” also have been found in ~20% of deep endometriosis lesions where proximal cancer has not been reported [5].

If ovarian cancer develops in women with endometriosis through transformation of endometriomas into malignant tissue, then only women with endometriomas (and likely endometriomas with a specific genetic signature) are at risk for endometriosis-driven ovarian cancer.

However, this does not explain other cancer risk among women with endometriosis. Therefore, we must consider that endometriosis and cancer are “co-morbid” diseases, meaning that women with certain biology or characteristics or lifestyle or environment are more likely to develop endometriosis and are also more likely to develop cancer.

Conceptually this means that endometriosis is a “marker” of sorts for a group of women who have a higher chance of developing cancer compared to women without this “marker.”

Cancers investigated in association with endometriosis include:

Ovarian cancer and endometriosis

Endometriosis and cancer – Endometriosis.org (3)Ovarian cancer is the cancer that has most consistently been associated with endometriosis. However, it should be noted that the subtypes of ovarian cancer that are associated with endometriosis (endometrioid and clear cell) are the types that are most frequently detected at an earlier stage and have a better prognosis than other ovarian cancer types.

Endometriosis and cancer – Endometriosis.org (4)Ovarian cancer in thegeneral femalepopulation has a rate of 1.3% – which means that a little over 1 in 100 women will develop ovarian cancer in their lifetime.

For women with endometriosis, this rate is 1.8% [6] – which means that a little under 2 in 100 women with endometriosis will develop ovarian cancer in their lifetime.

Let us be clear:most women with endometriosis (a little over 98 out of 100) will NOT develop ovarian cancer. The risk is so low thatcurrently routine screening is not recommended [7,8].

The Lancetrecently publishedfacts about endometriosis and ovarian cancer and put the risk into perspective [6]:

According to recent estimates, 39% of women who inherit a harmfulBRCA1mutation, and 11-17% who inherit a harmfulBRCA2mutation (the rare genes that predispose to breast cancer) will develop ovarian cancer by age 70 years.

Furthermore, as a female in the general population, your risk of breast (12%), lung (6%), and bowel (4%) cancers are still higher than your risk of developing ovarian cancer.

Breast cancer and endometriosis

Endometriosis and cancer – Endometriosis.org (5)Because endometriosis and breast cancer are both prevalent, it may appear incorrectly that they are related. However, they do share a key pathogenic insult: they are both dependent on the hormone oestrogen, which means that they both proliferate in the presence of higher levels of this hormone in the body.

Fourteenstudieshave reported on endometriosis and breast cancer. While sixof them observed a modest higher breast cancer risk in women with endometriosis, four others reported no difference in risk at all, and four observed a lower breast cancer risk among women with endometriosis [3].

A recent study suggested that while there was no association between endometriosis and breast cancer overall, there may be greater risk for specific hormone receptor-specific subtypes of breast cancer [9].

Based oncurrent evidence, this is inconclusive. Further study is critical, including consideration of the impact that hormonal medical treatments may have on breast cancer risk rather than the endometriosis itself.

Whether or not you have endometriosis:check your breasts regularly and seek medical help if you find irregularities. No one can perceive changes in your body as well as you can.

Endometrial and cervical cancer with endometriosis

Studies into endometrial and cervical cancersare basedon very low numbers of women. However, they all report either no association, or, for cervical cancer – a lower risk in women with endometriosis [3].

Endometriosis and cancer – Endometriosis.org (6)It is possible that this is due the demonstrated access to care that women with endometriosis have to have received a diagnosis and also their vigilance aboutkeeping up with regular smears and examinations. Cervical cancer is preventable if changes in the cervix are caught early and treated before they become cancer.

Keep those smears up!

Melanoma skin cancer and endometriosis

Among non-gynaecological cancers, melanoma skin cancer has been the most studied in relation to a history of endometriosis.

Out of the 12 studies that explored this potential connection, seven suggested a positive association, while five studies reported no clear relation between endometriosis and melanoma risk [3].

So, the evidence is not yet conclusive – butdon’t forget to cover up and have routine skin checks at your annual physical!

Non-Hodgkins lymphoma and endometriosis

Humoral immunity abnormalities have been documented in women with endometriosis, and theremay be a link between B-cell activation in endometriosis and the development of B-cell lymphoma [10].

The largest population-based studies have documented an association with non-Hodgkin’s lymphoma and endometriosis – but not consistently and based on very small numbers so far [10].

Other cancers and endometriosis

Investigationsof associations with other cancers have been sparse. Consequently, no firm conclusions can be drawn with regards to subsequent risk of other malignancies in women with endometriosis [3].

Conclusion about endometriosis and cancer

Endometriosis and cancer – Endometriosis.org (7)Before endometriosis can be linked with evidence to any type of cancer, more methodologically-robust research will need to be undertaken. This research must be large enough, and detailed enough, with advanced methods applied to account for the inter-relationships among these detailed data, to tease apart whether or not cancers can be attributed to:

  1. the physiological changes induced by endometriosis (chronic pain, infertility, chronic inflammation, aberrant hormonal and immunologic responses);
  2. treatments for endometriosis-associated symptoms including lifestyle changes that women take on,medications prescribed to treat chronic pelvic pain or painful intercourse or irritable bowel, medications prescribed to achieve pregnancy in those who also experience infertility;
  3. common aetiological factors yet to be identified, such as genes, methylation patterns, protein expression, and micro-RNAs to name just a few of the emerging areas for disease-causing discovery [10].

It is important to note here too that, just as there are important subtypes identified for all cancers (for example the ovarian cancer[1] and breast cancer types mentioned above),

we must discover the different types of endometriosis and what defines them. This is critical to determine for those cancers that are found to be associated with endometriosis, which type is the root of that association.

Knowing that will help us to determine an individual woman’s risk more accurately and to develop targeted screening and intervention. This will also further our understanding of the physiology underlying this relationship with cancer that is crucial to discover ways of prevention.

This, however, requiresfinancial investment in and participant commitment to research!

Endometriosis and cancer – Endometriosis.org (8)

WERF EPHect is a global collaboration of research institutions utilising standardised data collection tools

Consistent, prospective, data collection is what WERF EPHectis all about.

Through the commitment of women, clinicians, and scientists across the globe, theses collaborators’ collection of large and comparable data sets may collectively ensure that we will know a lot more about endometriosis in the next few years – including the truth about endometriosis and cancer risk.

What can I do to lower my cancer risk?

Endometriosis and cancer – Endometriosis.org (9)Half of cancers are preventable, with several key actions that you can take to lower your risk.

In general, to improve health and lower risk of any cancers, try to have a balanced diet with a low intake of alcohol, exercise regularly, maintain a healthy weight, and do not smoke [6].

More detailed information on cancer risk and prevention can be calculated for you individually at:
Your disease risk: the source on prevention.

At all times: if you are detecting changes in your body or symptoms that worry you, then do seek medical help.

References
  1. Thomsen LH, et al.Risk factors of epithelial ovarian carcinomas among women with endometriosis: a systematic review.Acta Obstet Gynecol Scand2017;96(6):761-778.
  2. Guo S-W, et al. Endometriosis and ovarian cancer. Lancet Oncol 2012;13(5):e189-90.
  3. Kvaskoff M, et al. Endometriosis: a high-risk population for major chronic diseases?Hum Reprod Update 2015;21(4):500-516.
  4. Anglesio MS, et al. Multifocal endometriotic lesions associated with cancer are clonal and carry a high mutation burden. J Pathol 2015;236:201-209.
  5. Anglesio MS, et al. Cancer associated mutations in endometriosis without cancer. N Engl J Med 2017;376(19):1835-1848.
  6. Kvaskoff M, et al.Informing women withendometriosisaboutovarian cancerrisk. Lancet2017;390:2433-34.
  7. Johnson NP, et al. Consensus on current management of endometriosis. Hum Reprod 2013;28(6):1552-68.
  8. Dunselman GA, et al. ESHRE guideline: management of women with endometriosis.Hum Reprod2014;29(3):400-12.
  9. Farland LV, et al. Laparoscopically Confirmed Endometriosis and Breast Cancer in the Nurses’ Health Study II. Obstet Gynecol 2016;128(5):1025-1031.
  10. Vigano P, et al, 2012 (in: Giudice, Evers, and Healy, Endometriosis: Science and Practice)
See also
Endometriosis and cancer –  Endometriosis.org (2024)

FAQs

Can endometriosis turn into endometrial cancer? ›

There's no research that links the two together. In fact, endometriosis doesn't carry an increased risk for most other types of gynecological cancer, either. That includes endometrial cancer, despite the linked names. And there's no genetic trait associated with endometriosis that could lead to cancer.

What are the chances of endometriosis turning into cancer? ›

While endometriosis is a common disease, the overall risk of an endometriosis-associated cancer remains low. In a large epidemiological study, the overall frequency of ovarian cancer arising in a patient with a diagnosis of endometriosis was 0.3–0.8%, a risk that was 2–3 times higher than controls [46].

What cancers are associated with endometriosis? ›

Aside from ovarian cancer, the risk of several types of cancer, including breast cancer, haematologic malignancies, non-Hodgkin's lymphoma and brain tumours, is increased in patients with endometriosis (Melin et al. Human Reprod.

Is there a link between endometriosis and ovarian cancer? ›

Endometriosis is associated with an increased risk of developing epithelial ovarian cancer (EOC), mainly the endometrioid and clear cell cancer.

What were your first signs of endometrial cancer? ›

Early warning signs of endometrial cancer
  • Unusual vagin*l discharge not caused by menstruation.
  • Difficult or painful urination.
  • Pain during sex.
  • Pelvic pain.
  • Unintentional weight loss.
20 Jun 2022

Which is the biggest risk factor for endometrial cancer? ›

The major risk factor for endometrial carcinoma (EC) is the presence of a clinical scenario associated with an excess of endogenous or exogenous estrogen without adequate opposition by a progestin.

What is the life expectancy of someone with endometriosis? ›

Because surgery is required for an official diagnosis, research shows that women live with endometriosis for an average of seven years from first symptoms until diagnosis.

How long can you live with endometriosis cancer? ›

Survival rates can give you an idea of what percentage of people with the same type and stage of cancer are still alive a certain amount of time (usually 5 years) after they were diagnosed.
...
5-year relative survival rates for endometrial cancer.
SEER Stage5-year Relative Survival Rate
All SEER stages combined84%
3 more rows
28 Feb 2022

Why endometriosis is a pre cancer disease? ›

Endometriosis is an estrogen dependent disease, which causes chronic inflammation and may lead to pelvic pain and infertility. Women with endometriosis have a 1.5 to 2-fold risk for ovarian epithelial cancer. The risk is increased especially for the endometrioid and clear cell histological types of ovarian carcinoma.

Can endometriosis spread to other organs? ›

Endometriosis often involves the pelvic tissue and can envelop the ovaries and fallopian tubes. It can affect nearby organs, including the bowel and bladder. So during the menstrual cycle, or period, this tissue responds to hormones, and due to its location, frequently results in pain.

What is considered severe endometriosis? ›

Stage 4 or severe: This is the most widespread. You have many deep implants and thick adhesions. There are also large cysts on one or both ovaries.

What are 3 causes of endometriosis? ›

What causes endometriosis?
  • Problems with menstrual period flow. Retrograde menstrual flow is the most likely cause of endometriosis. ...
  • Genetic factors. Because endometriosis runs in families, it may be inherited in the genes.
  • Immune system problems. ...
  • Hormones. ...
  • Surgery.
22 Feb 2021

Does endometriosis behave like cancer? ›

Abstract. It is well known that certain aspects of endometriosis are similar to those of malignant disease. For example, like cancer, endometriosis can be both locally and distantly metastatic; it attaches to other tissues, invades, and damages them.

How often is an Endometrioma cancerous? ›

Endometriosis was associated with a significantly increased risk of clear-cell and endometrioid invasive ovarian cancer with an odds ratio ranging from 3.7 to 35.4. A recent pooled analysis showed also a 2-fold increased risk for low-grade serous carcinomas [46].

Does endometrial cancer show up in blood tests? ›

CA-125 blood test. CA-125 is a substance released into the bloodstream by many, but not all, endometrial and ovarian cancers. If a woman has endometrial cancer, a very high blood CA-125 level suggests that the cancer has likely spread beyond the uterus. Some doctors check CA-125 levels before surgery or other treatment ...

Where do you feel pain from endometrial cancer? ›

Pelvic pain, a mass, and weight loss

Pain in the pelvis, feeling a mass (tumor), and losing weight without trying can also be symptoms of endometrial cancer. These symptoms are more common in later stages of the disease.

Where is the pain for endometrial cancer? ›

Endometrial cancer can also cause pain in the pelvic area, less commonly during sexual intercourse. Some people also experience pain when urinating or difficulty emptying the bladder. As the cancer progresses, there may be: a feeling of a mass or heaviness in the pelvic area.

Which is the earliest and the most common symptom of endometrial cancer? ›

The most common symptom of endometrial cancer is abnormal vagin*l bleeding, ranging from a watery and blood-streaked flow to a flow that contains more blood. vagin*l bleeding during or after menopause is often a sign of a problem.

Can stress cause endometrial cancer? ›

There is no conclusive evidence that stress is associated with increased risk of endometrial cancer.

Where does endometrial cancer spread first? ›

Endometrial cancer is a type of cancer that starts in the lining of the uterus, called endometrium. It happens when cells in the endometrium grow out of control and crowd out normal cells. Endometrial cancer cells can spread to other parts of the body such as the vagin* or liver and grow there.

Does endometriosis qualify you for disability? ›

You may still be able to qualify for disability benefits through Social Security, however, if your endometriosis limits your functional capacity to such an extent that you cannot work at the level of substantial gainful activity, even with treatment.

What will happen if endometriosis is left untreated? ›

If not treated, endometriosis can lead to complications such as: Infertility. Debilitating pelvic pain. Adhesions and ovarian cysts.

Does endometriosis worsen with age? ›

Common Endometriosis Symptoms

For many, it gets worse as they get older. Other endometriosis symptoms include: Very long or heavy periods. Severe cramps.

Does endometrial cancer spread quickly? ›

The most common type of endometrial cancer (type 1) grows slowly. It most often is found only inside the uterus. Type 2 is less common. It grows more rapidly and tends to spread to other parts of the body.

Can endometriosis cancer be cured? ›

Endometrial cancer can usually be cured because it is usually diagnosed early.

Is endometrial cancer highly curable? ›

While a diagnosis of uterine cancer can be scary, it is important to know that its most common form—endometrial cancer—is curable, especially if it is caught at an early stage. Uterine cancer is a blanket term for cancers that can develop inside a woman's uterus.

What thickness of endometrium indicates cancer? ›

in which correlation between endometrial thickness and endometrial cancer risk was examined, a 6.7% risk of endometrial malignancy was found in patients with an endometrial thickness of over 11 mm and a 0.002% risk of endometrial thickness below 11 mm (10).

How long before endometrial hyperplasia turns into cancer? ›

In one study, hyperplasia without atypia progressed to endometrial carcinoma in fewer than 5% of women; in comparison, atypical hyperplasia progressed to endometrial carcinoma in one in eight women within 10 years, and in one in three women within 20 years.

How do you know if endometriosis has spread to your brain? ›

Symptoms of cerebral endometriosis may overlap with known symptoms of endometriosis, and can be characterized by headaches and seizures. Problems with gait (the manner of walking) are also possible.

What virus causes endometriosis? ›

Endometriosis lesions contain frequently HPVA viruses

In a prospective case control study, endometriosis was specifically associated with upper genital tract high risk HPV infection but not with other sexually transmitted diseases (Rocha et al., 2019).

What happens if endometriosis spreads to your brain? ›

Endometriosis induced pain sensitization, anxiety, and depression by modulating brain gene expression and electrophysiology; the effect of endometriosis on the brain may underlie pain sensitization and mood disorders reported in women with the disease.

What is Endo belly? ›

Endo belly is the colloquial term for abdominal distension caused by endometriosis. Unlike the short-term bloating that sometimes accompanies your period, endo belly is much more severe, triggering physical, mental, and emotional symptoms.

How do people live with severe endometriosis? ›

Here are tips to help you live with endometriosis:
  1. Take pain medication as needed. ...
  2. Use heat to combat pain. ...
  3. Change your diet. ...
  4. Get (and keep) moving. ...
  5. Learn about chronic pain management. ...
  6. Consider hormone therapy. ...
  7. Discuss surgical options with your doctor.

How long does it take for endometriosis to become severe? ›

Being an advocate for oneself may help minimize the time it takes to get a diagnosis in people with the condition. It's not uncommon for a diagnosis to take ~5 years (or between 3-11 years) after the onset of symptoms (5, 32).

What deficiency causes endometriosis? ›

Vitamin D deficiency has been strongly linked to endometriosis. Research has shown that not only do low levels contribute to the development of the disease, but also its severity, and even the size of endometriomas, though this is now being debated.

Is endometriosis caused by lifestyle? ›

Lifestyle factors such as alcohol/caffeine intake, smoking, and physical activity influence estrogen levels in the body and, therefore, may impact development of endometriosis. Caffeine intake has been hypothesized to be influential in the pathology of gynecological disease due to its ability to influence estradiol.

How can you tell the difference between endometriosis and ovarian cancer? ›

People with endometriosis can have severe pelvic pain, heavy menstrual bleeding, and difficulty getting pregnant. Ovarian cancer also involves abnormal tissue growth that can affect the reproductive system. Unlike endometrial cells, these cancerous growths are not benign.

What does endometrial cancer discharge look like? ›

In some women, endometrial cancer can cause a thin, watery, or whitish discharge. Most women with bleeding or discharge do not have cancer. Other symptoms can include pain in your belly or pelvis, weight loss, and pain during sex.

Can cancer be misdiagnosed as endometriosis? ›

Misdiagnosed endometriosis is a recognized factor in treatment delays and worsening conditions, leading to infertility and chronic pelvic pain, especially in blacks [2] . Endometriomas have been misdiagnosed for pelvic tumors mainly; fibroids and malignant ovarian tumors [2] .

What cancers can endometriosis cause? ›

That includes endometrial cancer, despite the linked names. And there's no genetic trait associated with endometriosis that could lead to cancer. Some rare types of ovarian cancer, like clear cell ovarian cancer and endometrioid ovarian cancer, are more common in women with endometriosis.

Should endometriomas always be removed? ›

The general consensus is that ovarian endometriomas larger than 4 cm should be removed, both to reduce pain and to improve spontaneous conception rates. The removal of ovarian endometriomas can be difficult, as the capsule is often densely adherent.

When should I worry about endometrioma? ›

If an ovarian endometrioma ruptures, you may experience severe, sudden abdominal and pelvic pain on the side where the cyst is located. If you have these symptoms or think you may have a ruptured cyst, seek medical attention immediately.

Which is the earliest and the most common symptom of endometrial cancer? ›

The most common symptom of endometrial cancer is abnormal vagin*l bleeding, ranging from a watery and blood-streaked flow to a flow that contains more blood. vagin*l bleeding during or after menopause is often a sign of a problem.

What is the life expectancy of someone with endometriosis? ›

Because surgery is required for an official diagnosis, research shows that women live with endometriosis for an average of seven years from first symptoms until diagnosis.

How long does it take for endometrial hyperplasia to turn into cancer? ›

Atypical hyperplasia can turn into cancer of the womb. 20 years after diagnosis, around 28 out of every 100 women diagnosed with atypical hyperplasia will develop cancer of the womb. However, hysterectomy is a complete cure if carried out before the cancer develops.

Can Stage 4 endometriosis turn into cancer? ›

Stage 4 endometriosis is not endometrial cancer. The staging of endometriosis indicates how severe the disease is, but it does not mean it's more likely to develop into or cause cancer. Stage 4 endometriosis is a painful disease that has caused uterine tissue to grow outside the uterus, creating scar tissue.

Where do you feel pain from endometrial cancer? ›

Pelvic pain, a mass, and weight loss

Pain in the pelvis, feeling a mass (tumor), and losing weight without trying can also be symptoms of endometrial cancer. These symptoms are more common in later stages of the disease.

Where do you feel endometrial cancer? ›

Symptoms include abnormal vagin*l bleeding, pain during intercourse, difficult or painful urination, and pain in the pelvic area. Endometrial cancer is highly treatable when found early.

Where is the pain for endometrial cancer? ›

Endometrial cancer can also cause pain in the pelvic area, less commonly during sexual intercourse. Some people also experience pain when urinating or difficulty emptying the bladder. As the cancer progresses, there may be: a feeling of a mass or heaviness in the pelvic area.

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